My daughter was diagnosed with eosinophilic gastroenteritis when she was 16 years old. She passed away last March at the age of 27. The disease quickly overwhelmed her and she died from a retroperitoneal hemorrhage. The doctors she had seen during the weeks prior to her death didn't have a clue.

My 2 year old son was diagnosed with Eosinophilic Esophagitis in January 2009. He is continuing to get worse and I feel like the drs aren't treating him aggressively enough or fast enough.
I'm seeking opinions/advice/comments from those who deal with this on a day-to-day basis- patients and parents.
Thanks in advance.
Hugs~
Casey

Some people in this community might be interested in a clinical trial in pediatric eosinophilic esophagitis patients to study Oral Viscous Budesonide (OVB) being conducted.
This trial is evaluating the safety and efficacy of OVB in children and adolescents and is being conducted at multiple centers of excellence in the treatment of gastrointestinal diseases in the U.S. This study, which has a 12-week treatment period, includes patients 2 to 18 years of age and is evaluating three different doses of OVB versus an inactive medicine. The study is measuring each patient’s response to therapy by measuring the number of eosinophils in the esophagus before and after OVB administration, as well as evaluating the changes in the patients’ symptoms.
Budesonide has been approved by the Food and Drug Administration for treating asthma and other diseases in children and adults. The oral formulation of budesonide being used in the clinical study is designed to deliver budesonide to the esophagus and is intended to treat local eosinophilic inflammation and associated symptoms.
More information about the trial can be found: http://clinicaltrials.gov/ct2/show/NCT00762073?term=Meritage&rank=2 or by consulting your physician.

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